What shall I do?

[margherita]

Hi everyone.
I haven't posted for months (even though I enter TP almost every day) because I haven't had anything to say about my husband's dementia, the progression of which seemed to be quite slow.
He was diagnosed in March 2016 and only recently has his situation worsened.
What has just happened has induced me to ask for your advice.
We had just finished lunch and were still sitting at table. The TV was on because OH likes watching the news.
Out of the blue he asked me : " Have my mother or my father phoned us recently?"
( OH is 81years-old and his parents died more than 25 years ago).
I was more embarrassed than worried or surprised and only managed to drawl "Nnnooo, they haven't".
He replied " Well, I'll call them, but later, because they must be having a nap now".
Thanks to TP a word ," distract", flashed in my mind and so I offered him a coffee and he seemed to have forgot about calling his parents.

But what shall I do next time if / when he asks me the same question?
Is he likely to remember his parents are dead? Might what happened be a one-off? In your experience, once a PWD has lost awareness about something, is that lost forever?

 

[jenniferjean]

Distract might work again but be prepared with something else like - I don't think their phone is working at the moment.

 

[Pete1]

Hi @margherita, it is a bit of a shock the first time it happens - are you sure your husband hasn't got any underlying infection (UTI) that can sometimes cause confusion of that nature? If not, it is a tricky (but sadly common) issue that is likely to happen again. It depends on his reaction really, with my Mum I used to explain her mother (whom she asked about) had passed away a few years ago, her only concern was whether she had been to the funeral and I confirmed that she had and it would pass (she didn't get distressed at all). However, others have said that their loved one with dementia has got very upset at the news each time they are made aware, so in that circumstance a distraction like you did seems to be the kindest thing to do. I think probably be prepared for him to ask again at some juncture and have a plan of action to deal with it that you think will best suit your husband. All the best.

 

[Grahamstown]

Hello @margherita I was trying to explain to my husband that his sister had died because I felt that he should be told. A while later he asked if his father and then his mother were still alive. Like you I was taken aback because I could understand that he would not be able to take in his sister’s death but his parents are well in the past. He too is 81. I answer his questions with a yes or a no with no expanding and he forgets quite quickly and doesn’t seem distressed so I guess it depends on the individual. As always symptoms are similar but differ in individuals. It’s horrible and upsetting because it’s a glimpse into a world which we can’t imagine. He hardly speaks much at all now but every now and then something like this pops out and it gives me the chills.

 

[margherita]

Distract might work again but be prepared with something else like - I don't think their phone is working at the moment.

Good idea! I think I might call my second mobile and tell him his parents mustn't be at home.

 

[margherita]

Hi @margherita, it is a bit of a shock the first time it happens - are you sure your husband hasn't got any underlying infection (UTI) that can sometimes cause confusion of that nature? If not, it is a tricky (but sadly common) issue that is likely to happen again. It depends on his reaction really, with my Mum I used to explain her mother (whom she asked about) had passed away a few years ago, her only concern was whether she had been to the funeral and I confirmed that she had and it would pass (she didn't get distressed at all). However, others have said that their loved one with dementia has got very upset at the news each time they are made aware, so in that circumstance a distraction like you did seems to be the kindest thing to do. I think probably be prepared for him to ask again at some juncture and have a plan of action to deal with it that you think will best suit your husband. All the best.

OH has recently had his blood and urine tests which were ok.
I think his increasing confusion is connected to the progression of Alzheimer's.
His question caught me by surprise since I didn't imagine he was so advanced , even though it is not the first time OH has said something utterly irrational. A few days ago he told me he wanted to ask HIS wife if the phone bill had been paid. Too bad I AM his wife. Who did he think he was speaking to? The mind of a PWD is such a mystery.

 

[margherita]

. It’s horrible and upsetting because it’s a glimpse into a world which we can’t imagine. He hardly speaks much at all now but every now and then something like this pops out and it gives me the chills.

My husband talks a lot, usually nonsense.
What strikes me most , even more than his poor memory, is his lack of any logical reasoning.
Re his parents , I think I won't tell him they're dead. Telling him the truth is useless at its best, and upsetting at its worst.
I made a similar decision many years ago.
When my father died, my mother , who had dementia and was in a care home , often asked me how my father was and I used to say he was well. With the progression of her illness, she stopped asking about him. I think I made the right decision ,even if someone might say she had a right to know .

 

[Grannie G]

My husband continually asked me to contact his mother. I always said I`d written but had no reply yet. [ She would have been in India and somehow he had an idea she wouldn`t have been in this country ]

When he asked for something unsuitable or inappropriate, I always said I`d sort it tomorrow.

I never told him anything truthful which I knew would have upset him.

 

[PalSal]

It is inevitable that the disease moves onward and weird stuff will just happen I guess. My Nick doesn't remember much of anything....and has lots of confused and mixed memories. Its all mixed up for him. I think you may as well tell a few white lies than risk upsetting him, he will not remember anyway. Good to see you posting again.

 

[Vitesse]

OH has recently had his blood and urine tests which were ok.
I think his increasing confusion is connected to the progression of Alzheimer's.
His question caught me by surprise since I didn't imagine he was so advanced , even though it is not the first time OH has said something utterly irrational. A few days ago he told me he wanted to ask HIS wife if the phone bill had been paid. Too bad I AM his wife. Who did he think he was speaking to? The mind of a PWD is such a mystery.

Mystery is the right word. A few months ago, my husband started to say his wife (me) had gone and was at her sisters. I seemed to have slotted into her place, and he would try to explain to me how to get to places, how to use various pieces of equipment in the home etc. In the last few days he has started to say that his wife has died. He is still happy to have me here but asked whether I was a nurse or something. I just told him I am a carer, and that seemed to suffice. It’s heartbreaking but easier to go with the flow than try to explain anything.

 

[northumbrian_k]

Hi @margherita, good to hear from you even though your circumstances seem to be getting more difficult. Confusion about time, place and person is very common. My wife often talks about her parents and her grandmother as if they are still alive. Her dad still works at the shipyards (closed more than 25 years ago). If something needs doing she says that she will ask him as he 'knows everything'. She can see 'gran's house' from the window of her bedroom as well as from the ' lounge of her care home and believes that she will be going there for tea. This seems to comfort her so I don't comment. It is almost as if she is a child again.

I try to ignore her talk about her long dead relatives. Distraction doesn't seem to work and telling her that they are dead would be cruel and pointless as she would not remember. If ignoring it does not work I say anything that comes to mind to help the moment pass. Perhaps they will ring later, we'll go to see them in a day or two, I'm sure that they are doing fine and so on. It is hard work and not helped when she asks me by name (K) where K (that's me) is and what time he will be back ...

 

[margherita]

Hi @margherita, good to hear from you even though your circumstances seem to be getting more difficult. Confusion about time, place and person is very common. My wife often talks about her parents and her grandmother as if they are still alive. Her dad still works at the shipyards (closed more than 25 years ago). If something needs doing she says that she will ask him as he 'knows everything'. She can see 'gran's house' from the window of her bedroom as well as from the ' lounge of her care home and believes that she will be going there for tea. This seems to comfort her so I don't comment. It is almost as if she is a child again.

I try to ignore her talk about her long dead relatives. Distraction doesn't seem to work and telling her that they are dead would be cruel and pointless as she would not remember. If ignoring it does not work I say anything that comes to mind to help the moment pass. Perhaps they will ring later, we'll go to see them in a day or two, I'm sure that they are doing fine and so on. It is hard work and not helped when she asks me by name (K) where K (that's me) is and what time he will be back ...

Hi, @northumbrian_k ,
I feel so embarassed and a bit afraid that, while I go along with his delusions , he regains awareness of what things are actually like...but that isn't likely to happen, is it?

 

[margherita]

Mystery is the right word. A few months ago, my husband started to say his wife (me) had gone and was at her sisters. I seemed to have slotted into her place, and he would try to explain to me how to get to places, how to use various pieces of equipment in the home etc. In the last few days he has started to say that his wife has died. He is still happy to have me here but asked whether I was a nurse or something. I just told him I am a carer, and that seemed to suffice. It’s heartbreaking but easier to go with the flow than try to explain anything.

Hi @Vitesse ,
I agree with you about going with the flow. What else can we do? "Never argue, never explain" is what I learned when I first entered TP and keep repeating to myself.

 

[millalm]

Hi @ margherita
You are right, it is unlikely to happen and if it does it will be just for a fleeting moment. My Mum will say ' can you get me those 'gobbledegook', I say sure , then she says what colour are they ? LOL Then I say have a cookie and all is well I agree with Grannie G, never tell our loved ones anything that will upset them. Particularly when it comes to the death or life of their loved ones.

 

[margherita]

It is inevitable that the disease moves onward and weird stuff will just happen I guess. My Nick doesn't remember much of anything....and has lots of confused and mixed memories. Its all mixed up for him. I think you may as well tell a few white lies than risk upsetting him, he will not remember anyway. Good to see you posting again.

Hi @PalSal,
I suppose there is nothing we can do to decrease their confusion and consequent distress.
Some days ago OH was sure he had lost "something" and kept looking for it, but when I asked him what he was looking for, he answered " I do not know ". I tried to make him reason ( how silly of me), but I soon gave up.

 

[margherita]

My husband continually asked me to contact his mother. I always said I`d written but had no reply yet. [ She would have been in India and somehow he had an idea she wouldn`t have been in this country ]

When he asked for something unsuitable or inappropriate, I always said I`d sort it tomorrow.

I never told him anything truthful which I knew would have upset him.

Hi @Grannie G ,
They keep asking the same questions, but think it is the first time , don't they?
Therefore, giving them the same answer over and over again makes sense in their world of dementia where any form of logical reasoning is no longer possible.
I still find it difficult to get used to not trying to make OH reason.
I still think of him as a little child, but unlike them he can neither learn nor remember anything.

 

[margherita]

Hi @ margherita
You are right, it is unlikely to happen and if it does it will be just for a fleeting moment. My Mum will say ' can you get me those 'gobbledegook', I say sure , then she says what colour are they ? LOL Then I say have a cookie and all is well I agree with Grannie G, never tell our loved ones anything that will upset them. Particularly when it comes to the death or life of their loved ones.

Hi @millalm ,
I often ( always) think OH's dementia makes me live in a surreal world where the elementary rules of logical communication are either overturned or cancelled. There are humorous moments too , but the prevailing feeling is exasperation.

 

[Vitesse]

Hi @millalm ,
I often ( always) think OH's dementia makes me live in a surreal world where the elementary rules of logical communication are either overturned or cancelled. There are humorous moments too , but the prevailing feeling is exasperation.

You’ve summed up my feelings here. We have always been a logical couple who who would discuss things in a rational way. I still try and get an overwhelming feeling of sadness when it all comes to nothing. He gets distressed when I can’t understand what he’s trying to tell me, and gets cross if I can’t answer his questions. In his head he’s making perfect sense!

 

[jenniferjean]

I still find it difficult to get used to not trying to make OH reason.
I still think of him as a little child, but unlike them he can neither learn nor remember anything.

It is really difficult and I still struggle. It just seems so logical to teach them like you would a child, but of course it's pointless.

 

[Blueiris]

Most of the above is happening to me with my partner. I used to say they had passed away and give him the dates and even photos of the gravestones and he would never believe me. It made him more agitated so i play it by ear depending on the situation. Sometime distraction helps but i say they are on holiday or out and move on quickly to a different subject. Its the being one step ahead that is difficult.